Anyone choose to get neobladder?
I met with my oncology urologist today and he surprised me by asking if I'd considered a neobladder instead of an external bag. I know what that is, but I've not done any research to compare the two. I'm sure each has pros and cons, but I really need to hear from anyone who HAS a neobladder or opted NOT to go that route. Surgery is set for May 25, so I have a few weeks to decide. Neo is clearly less impact to daily life, but the Dr warned me that quite a few patients find they need to self-cath every day (which makes me a bit nervous).
thanks for updating us on what’s going on. It’s good he is discussing options with you. I have a bag myself but there are others on here with a neobladder who will for sure be able to share their experiences. Meantime, this might help as an initial read. https://bladdercancer.net/coping/neobladder Laura, Moderator, BladderCancer.net Thanks for that link. It matches what the Dr said, but I want to hear from people who are living with the neo - not the clinical description. I have a friend with bad kidneys who has been doing 5 caths/day. He doesn't like it and hopes to find a solution. Anyone who chooses neo might be signing up for a lifetime of it. some more useful links: https://bladdercancer.net/living/neobladder-surgery-recovery https://bladdercancer.net/living/decision-neobladder https://bladdercancer.net/living/new-neobladder Laura, Moderator, BladderCancer.net
@gnick540, I'm feeling for you. (I don't know much about neobladders, except that a friend was recently fitted with one.) You have a lot to do, deliberating between all your options. Kudos to you for investigating them before agreeing to any course of treatment. After all, the goal is to make the best-informed decision possible. I pray that it all goes well. ~Jacqueline, Moderator, BladderCancer.net
@gnick540 - Happy to hear that you have options as many of us did not. I am hoping that those with NEO's will jump on board here. One suggestion that I have is to ask which surgery your surgeon does most, what the success rate is from those procedures and how many of those people need to self cath, recovery time etc. I also suggest actually speaking with someone who has each. In the end it is entirely your decision and we will support you all the way. My best. Linda ( moderator, Bladdercancer.net team member)
My Dr is at Univ Tex Southwest - a pretty large operation. He gave me some numbers on success rate but I couldn't write fast enough. (I'm gonna start recording all my Dr visits!) Some interesting data he gave me: He prefers hands-on surgery over robotic bc it's much faster. Three hours vs. nine for robot. Add one hour to create neobladder. Recovery time for RC is 3-5 days, add one for neobladder. His last one was Fri last week. Patient went home Wed. I THINK he said 20% of patients with neo have to self cath regularly. hi. It is a lot of information to take in at one time. Good you are having open discussions with him about the options. Hopefully some of the articles can shared about gave you an insight into life with a neobladder to assist in the decision making process. Laura, Moderator, BladderCancer.net
